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Special friend remembered

Discussion in 'Lifestyle Management' started by Nielk, Sep 14, 2012.

  1. Nielk

    Nielk

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    Tribute to a friend with ME/CFS - beautifully written by Jody Smith

    I wrote this in memory of my friend Lynda Cunningham who has passed away --http://www.empowher.com/chronic-fatigue-syndrome/content/chronic-fatigue-syndrome-thief-steals-another-friend

    [​IMG]
    Published on EmpowHER - Women's Health Online (http://www.empowher.com)


    Chronic Fatigue Syndrome: The Thief Steals Another Friend

    By Jody Smith
    Created 09/13/2012 - 17:44
    [​IMG]

    My friend just died. Lynda suffered from a number of autoimmune conditions, not the least of which was Chronic Fatigue Syndrome.
    CFS descended upon her two decades ago, after she was exposed to someone with a bad virus.
    They got better, and their life went on. Lynda didn't recover, and her life did not.
    She lived with her two cats Oliver and Lilly. She was fortunate to have some assistance in her home from personal support workers -- many who are chronically ill don't have any help -- and Meals on Wheels.
    She was unfortunate in that all her old friendships had fallen away over the years and, unlike many of us chronics, she had no virtual life online.
    Lynda had a computer and used to know how to use it, but the cognitive thief CFS had stolen her ability to use a computer years ago.
    She had a doctor who did not "believe in" Chronic Fatigue Syndrome. This despite the fact that he stood by and watched her deteriorate over many years.
    He reinforced her fear that it was all in her head. Though he would not treat her condition, he also would not refer her to specialists who might have done her some good.
    Other general practitioners would not take her on as a patient because she had so much wrong with her. Something wrong with this picture?
    Lynda was a prisoner of her frail body and her faltering mental capacities, trapped within her home.
    One of her personal support workers had contacted me through my website Ncubator.ca, where I talked about my experience with Chronic Fatigue Syndrome.
    When she told me that Lynda couldn't use her computer, I knew from my own past isolation that this is a brutal loneliness.
    For that reason, I did something that I never do. I phoned Lynda. Phone conversations tend to exhaust me but I needed to do it, remembering what it's like to be so helpless and needing someone to respond.
    We never actually met but we spoke often on the phone over the last year and a half. It was a blessing for me to get to know her.
    It was a heartbreak to know that there was so little I could do for. We talked about our lives, our thoughts, our feelings. We told each other stupid jokes, and laughed like loons.
    I had thought Lynda was getting just a bit healthier in the last few months. We talked about having her come to visit.
    She was only a four hour drive away from me, but it might as well have been the other side of the world. I can't travel that far, and certainly neither could she.
    But talking about that future visit was something to put some hope into. And we did.
    And then she disappeared.
    She had talked several times about believing she didn't have much time left, and really she didn't want to be around much longer.
    Life was full of grief for Lynda. I could only hope that it was just her supreme discouragement talking.
    But a few weeks ago, I called her number and nobody answered. I called often, and the sense of foreboding grew with each unanswered call.
    I emailed someone who might know what was happening -- I hoped maybe it was yet another hospital stay, or perhaps she was feeling better and was just out when I phoned.
    I received an email that confirmed the worst. Lynda had passed away.
    We would never talk on the phone again, never have her over for a backyard barbecue. She would never rest in my spare room.
    Lynda was afraid that she would die and nobody would notice. I'm doing what I can to make sure that doesn't happen.
    I know that life was a heavy burden for her, and had been for years without letup. I know that she had been wishing to die and now the pain and isolation was over for her.
    I'm trying to accept that. But mostly I feel bad for me. Because my friend is gone.
    Visit Jody's website and blog at http://www.ncubator.ca and http://ncubator.ca/blogger
  2. Jody

    Jody Senior Member

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    Thank you Nielk.
  3. madietodd

    madietodd Senior Member

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    Very beautiful tribute.
  4. Dreambirdie

    Dreambirdie work in progress

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    Oh Jody, I am so sorry. What a sad story. How awful that the doctor did not even believe her! How heartbreaking to know someone like this and not be able to do anything to help.

    "Lynda was afraid that she would die and nobody would notice. I'm doing what I can to make sure that doesn't happen."

    Yes, the world really needs to know how devastating this illness is, and how much suffering it causes.

    Thank you so much for writing this tribute.
  5. Jody

    Jody Senior Member

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    Thank you MadieTodd.
  6. Jody

    Jody Senior Member

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    Thanks Dreambirdie.

    In a way it seems kind of pointless, Lynda is gone. It won't do anything for her.

    But I know all of us chronics have that thing lurking, that we could vanish and nobody would know or care. And I could make sure people knew about her.

    We could as a community remember her, underscore the fact that no matter how sick any of us are, we are of value.

    We are precious. We are storehouses of thoughts, memories, desires.

    Whether the rest of the world remembers us or not, our presence on this earth has mattered, no matter how long ago interaction with other people was compelled to come to a stop. It is I guess the chronic version of no man left behind.
    beaker, taniaaust1, ggingues and 2 others like this.
  7. Dreambirdie

    Dreambirdie work in progress

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    Jody, no it won't do anything for her. And really, it's probably a big relief for her to be free from a body that was so ill. But I do think that putting the word out about how devastating this illness can be has a powerful effect on all who read about it. Stories like this need to be told, and you did an awesome job telling it. So thank you again for that. :hug:

    And PS, thanks for checking in. I have missed you.
    taniaaust1 likes this.
  8. Jody

    Jody Senior Member

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    It's nice to be missed. :) I will try to pop in more often.
    Dreambirdie likes this.
  9. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    Yes, we missed you! Please pop in when you have a minute...and the energy! :hug:

    We don't want to have to wonder how you are doing.

    Sushi
  10. Jody

    Jody Senior Member

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    Thanks Sushi. :) It's been a long time.

    Things are very good these days. I am working fulltime for an online womens health and wellness website. I get to work at home, and take breaks when needed. Being able to earn a living is making everybody at home -- husband Alan and son Jesse -- feel better and it helps the healing process markedly. The only problem with earning a living is it cuts into my spare time :) so I just have not been here for quite awhile.

    I hope you are well?
    Nielk and Dreambirdie like this.
  11. CJB

    CJB Senior Member

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  12. maryb

    maryb iherb code TAK122

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    It was lovely to see you on here Jody.
    But so sorry to read about Lynda, how sad that she had to suffer so much, stories like these are truly heartbreaking, Its sad that we understand exactly how people feel but are unable to help more because of our own illness.
    The very people who can turn their backs - may they all live to regret this.
    I'm glad she had the phone calls from you, I'm sure she enjoyed them and they will have lightened her life a little
  13. Jody

    Jody Senior Member

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    Yes, too many are alone. I hope one day that member will be able to come back and tell us how they are.
  14. Jody

    Jody Senior Member

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    I think my calls helped. I felt helpless though, knowing there was so much that she needed and I lived too far away to do any of the things she needed. I knew if I could have just popped in and given her supplements every day, or made sure she ate something ... picked up something from the store ... had dinner with her ... When someone is that sick they need someone to put the food in their mouths for them. My son used to be that sick, I hate to think what could have happened to him if we had not been here with him.

    I think, the outpouring of genuine heartfelt emotion here and other places for Lynda is wonderful. And yet, as you say, so often all we can do is be a witness. If only we were more able to make the physical differences for each other.

    Still the outpouring is so important. Being a witness is so important. I think in this case with Lynda that was the main thing I did, I was a witness to her existence, her life, her value. So often chronics don't have even that. I am so touched by the reaching out of people who never knew her but who know how important this is.

    Thanks Maryb.
    beaker and ggingues like this.
  15. ggingues

    ggingues $10 gift code at iHerb GAS343 of $40

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    Yes, makes me think of Patrick, the young man, 40s?, who took his own life, due to desperation of this disease!

    GG
  16. Jody

    Jody Senior Member

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    I didn't know Patrick, but I'll remember him with you, GG.
  17. hurtingallthetimet

    hurtingallthetimet Senior Member

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    (((((((nielk))))))) how sad...you, your friend and her family and friends said a prayer for to heal....

    such a sad story....but sounds all to fimilair for alot : (

    you seem like a great kind and caring person and im sure your communications with her however it was meant alot to her and helped brighten her days....

    im glad she had the computer if it werent for computers and being able to lay back chair etc...alot of us coulndt talk to anyone who understands...and of course lap tops to lay in bed...

    just very very sad...so young.....the picture of her is so beautful...
  18. Aileen

    Aileen Senior Member

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    Jody, What a beautiful tribute. You did your friend proud. I cried when I read it. That could be so many of us.

    I wonder though, what do you think of making it more public? For example putting it in a newspaper and/or perhaps sending a copy to politicians. That would certainly be a way to make sure she was remembered and her life and the difficulties she faced had plenty of meaning? I don't want to exploit the tragedy but given her desire to be remembered and the unacceptable way she was mistreated, might you consider something? Just putting it out there.
  19. snowathlete

    snowathlete

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    Thanks for sharing Nielk. I feel sad for her, and you, as well as angry about how she was treated, but most of all, i feel relieved that she had you as a friend.
  20. Shell

    Shell Senior Member

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    Beautiful tribute from a real friend. It was so sad though that anyone should face death with such little care from those who should have. It's utterly heartbreaking.
    Perhaps the fact that this is yet another such story that is out there will one day prevent someone else having to face death in such a way.

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